Shining a light on invisible illness

This is a very personal post on an equally personal subject. If you’d rather not read it, consider this your trigger warning and move along to something more general. If borderline confessional blogs don’t bother you, by all means, enter my rabbit hole.

Wrist braces are cooler with duct tape. Everything, for that matter, is cooler with duct tape.

This much is true: I’ve known something was wrong as deep inside myself as my bones are. It ran through my blood, infiltrated my organs. Lived between the strands of my hair and whispered in my ear when I moved. “Wait,” it said. “You’ll see.”

I felt it like bread rising. Something bubbled inside me, fizzing languidly, waiting to burst forth, out of the pan that couldn’t hold me. Dripping down the sides of the oven and burning, burning on the coals below.

“When did it start?” Right after height (5’8″), weight (I never look), blood pressure (normal to good), pulse (fast, because doctors make me nervous), they always ask this question. As a writer, I understand the instinct to seek an inciting incident. There’s a catalyst for every war.

The grasping fingers in my brain reach back, back, back. Can I blame my propensity for fainting during church as a child? I always got too hot at holidays. Had to take off my Easter hat, the dead fox someone wrapped around my neck to make me a shepherd, sit in the cool darkness and sip water from a styrofoam cup while the congregation rose and fell to “Alleluia,” “Peace be with you.”

Or my tendency to go too far, something that’s as deeply bred in me as my great-grandmother’s hips, my grandmother’s nose. Slow and steady doesn’t win the race my brain wages against the clock counting down on the treadmill, the days until the big race.

“You have the beginnings of stress fractures in your shins,” a doctor told me, his eyebrows stern caterpillars. I was training for a half marathon with my father and my legs had begun to ache, then sting, then shoot electric pain, hot to my kneecaps, hot to the touch. The fire that fueled me toward the finish line rose to my skin, tickled its way through my bones.

“Stop running,” he said. “You’ll hurt yourself.”

Or the time I passed out on the street, passed out cold, and didn’t even wake up in time to see firemen hosing my blood off Pennsylvania Avenue. That’s one of my biggest regrets. It’s not a sight a person gets to see twice. All the kings horses and all the kings men, all the best Washington had to offer, couldn’t put the pieces together, and sent me on my way with caution. With a head shake that grew as familiar as my own.

What I mean is, there isn’t an answer as much as there is a thousand. As much as I can’t list my medical history because my history is that of a war-torn country whose records are scattered and burned. Because this puzzle is missing pieces, or they’re shaped just a little bit wrong, like a factory working child cut them with an X-acto knife without directions.

“I don’t know.”

My chart must be riddled with question marks, but like Godzilla with subtitles, the pen always moves too fast for my one-word answers. I always wonder what they’re saying, if I could learn more about myself, the skin-bound vessel that barely contains me, if I could just read my EMR.

The story is seven years long, if I try to recount it all, but it’s a boring story, the kind housewives tell at parties that trails off into a glass of iced-down chardonnay. I’m more of an aged bordeaux that way, cutting through the heaviest meal with a single stroke: I’m tired of skirting the question.

I have fibromyalgia (see the link for the sordid details), a disease that crept beneath my skin sometime during the past decade, that lay in wait as I learned to use the body it invaded, as stealthily as a trojan horse, as devastating as a nuclear bomb.

The disease is as individual as we are, which makes it hard to find, hard to pin down and impossible to eradicate. It’s a termite of the skin, a shrapnel bullet without a target, so it winds its way throughout the body, looking for a new place to strike every day, for years. Forever.

Some days, it turns my eyelids into lead, a noxious mercurial metal that weighs down my limbs and settles in my chest like an anchor.

Others, it shoots electricity through my fingers and toes, the soles of my feet and palms of my hands. It turns my neck into a lightning rod, and I’m electrified with something too bright to be called pain, the kind of light that vaporizes cities in cartoons meant to incite Cold War-era fear.

Still other times, it’s a dull, persistent ache, that nestles beneath my kneecaps, in the crooks of my elbows and wrists, in joints I didn’t know existed until they awoke to the pain that’s so variant, I ache equally for a synonym, a word that describes it more clearly.

Most, it’s a cocktail of all three.

I awake each morning and take inventory of my parts, like a mechanic would a car that didn’t belong to him, and didn’t matter except in abstract substance. I ask myself which pieces will rebel against me, or if they’ve coordinated their attack. My body is a weathervane, that way. Some days dawn bright and clear, a chance of an afternoon shower if I decide to walk too far or stretch my boundaries past their rubber band breaking points. Some days are thunderstorms. Others, tornados.

There’s research on the topic, of course. Brochures with furrowed brows and smiling faces that promise management, but no solutions. There are wikipedia pages and online support groups. But we have no Susan G. Komen. We have no races, no days of awareness. No one turns bridges purple for us, not yet.

“We need better drugs,” my rheumatologist told me with that familiar shrug, last time I asked him for another medication, a better one, one that would work, at last.“And for that we need research. But it takes time.”

For the almost two years since my diagnosis, I have kept it close to my often-aching chest. I’ve released the information like a holy grail, and by doing so, have given it a power far greater than it deserves. I’ve let it wage a fear campaign freely, without countering with awareness, with support.

In ways, my body has prepared me for decades, for the battle that is living with chronic illness, for fighting against it while living with it, simultaneously.

“Just wait,” it whispered, as every fiber I could recognize thrummed with potential energy. I’m a passionate person, and when that energy expressed itself as malfunction on a level so integral, I turned my passion inward. Toward working with it, instead of against it. Pain can fuel passion, too, I’ve learned.

But just as strongly as the introvert in me needs silence to store up that energy, my nature craves solidarity, the warm comfort of conversation. Words are my talismen, have been since I learned to use them. And now, almost two years later, I’m secure enough to reach out. To come out, in a sense. My skin is imbued with something that glows fiercely beneath the surface, but only emerges when I ask it to. Today, I’m asking.

I have fibromyalgia, something that defines my motions, but not my personhood. It challenges me to act against a force even the greatest minds in medicine don’t understand. I’ve always tended toward activism (see the photo of me screaming on the cover of the Western New York Catholic, circa 2006). I didn’t choose this cause, but we take up the swords we’ve been handed.

In honor of my 27th birthday, I’m challenging myself to step into the sunlight invisible disabilities shun. I want to work toward awareness, to encourage research into something so insidious, it attacks without warning, without cause. To those I haven’t told personally, understand that the words are difficult to find and harder to say. To those who have questions, please don’t hesitate to reach out and ask them. Let’s spread information together, in the hopes that it reaches the right ears. Help me put the puzzle pieces together. Help me keep them there, too.

You are an incredible writer and so appreciate how you have described fibromyalgia – been there, still doing it, just yesterday thought I was stung by a bee, but just one of those electric jolts. . . .

You are so gifted at telling your story and I know that many people will be touched by this. I have been where you are too, so it touched me deeply. I had been racked with this insidious disease since I was 12 and know your despair. I urge you to get a copy of the book “What your doctor may not tell you about Fibromyalgia” by Dr R. Paul St Amand MD. It will offer you so much insight into fibro and it is not trying to sell you anything. I and thousands of others have followed the guaifenesin protocol and have our lives back. Don’t take my word for it, check out our online support group at https://www.facebook.com/groups/Fibro.Buddies.Guaifenesin.Protocol/ or go to http://www.fibromyalgiatreatment.com for lots more information.

There IS hope. My daughter has just turned 27 and this protocol has allowed her to pursue her dream of violin playing that we thought was impossible when she was a very ill 17 year old. Those of us who have become well from the protocol, literally pay it forward by reaching out to others in an effort to stop the untold misery caused by fibromyalgia. We are so grateful for our second chance.

Don't let it get away!

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Words, words, words, words, words

Read. Write. Speak. Act out. Stand up. Live out loud. We are everything we were ever going to be, and what's more, we have the power to become even more than that. Words are tools and language is treasure. Use both wisely. You are literate, and heavily armed.